Hello is there anybody in there?

Hello,  is there anybody in there?

Just nod if you can hear me...

A knock at the door.

In my house, comfortably numb, preparing for the Wednesday night radio show, without a  thought of the repercussions,  I answered the door.

A cute little girl in a Frozen costume, her brother also wearing a frozen costume with Grandad and Grandma beaming brightly in the  front yard. They are all smiling and happy, the grandma is a recognisable Stafford identity. The group is obviously enjoying Halloween in Stafford, Trick or Treating in a neighbourhood where it is not really done. For the last 25 years it has been an older persons area, we were the young family. Years ago when my kids wanted to do Trick or Treating, I gave a warning to the elderly ladies around the corner, and a sneaky packet of wrapped lollies also.

Uh oh!! It is the 31st of October and in many places around the world this is happening. On the streets around here, the responses appear varied, a few houses are decorated in the Halloween colours of orange green and black with a liberal dose of store bought spray on cobwebs and a bit of crime tape. Where does that come from?

In general, the idea is if you want Trick or Treaters to visit, you turn your front light on, round these parts anyway. People actually sit in the darkness so as not to be visited by these types. Okay so I'm a nice lady, but a little forgetful sometimes, we had no wrapped candy, lollies, chocolates, eucalyptus, Fishermans Friend's nothing, zilch. Except fruit


https://www.mixcloud.com/RadioParkies_au/dj-madonna-radio-show-31-102018-on-radioparkiescom/

World Parkinson's Awareness Day #UniteForParkinsons

Tuesday 11 April, 2017 marks the 200th year since Parkinsons has become a recognised health condition. Major Parkinsons' organisations around the world will unite to create impact so amazing that people will stop and learn more about Parkinsons and what it is, the early signs and what the symptoms are. Why is it important? 

Young Onset Parkinsons disease. Parkinsons can affect anyone at any age and people in their early twenties have been diagnosed with Pd. I was diagnosed at 46, it was very straight forward, I was in the specialists room for about 10 minutes and was told very bluntly - textbook case, idiopathic Parkinsons disease, you didn't search Dr Google? I will give you a book that explains it. Do you think I got the book? 

My world was turned upside down. I was healthy, just a bit stiffer than I used to be,  and there was something about my walking that was a bit odd, the loss of dexterity was weird to me as I had used my hands to sew patchwork and stitch embroidery for many years. The biggest sign which actually scared me the most was the fact that both my hands wouldn't move on command, the right hand did what I wanted and the left hand was not participating like it was supposed to. Having no previous knowledge of Parkinsons I didn't realise that what was happening...when walking my left arm was not swinging and my left foot was not stepping correctly so the heel was dragging. Since then, gait training and medication has helped get my swing back and my foot lifting properly most times except for when the medication has worn off or when tiredness is a factor. Tremor is there too, it is called a resting tremor, isn't that fun? So when resting that's when the shakes can come, not good when trying to get to sleep. Not everyone has the shakes and medication can help alleviate this symptom. Relax...easier said than done. 

Medication on time, every time. In some cases when people with Parkinsons go to hospital their medication is taken off them and dispensed at the hospitals' regular medication time. This is horrific for people with pd whose medication is at specific times, most people with pd can feel the medication wearing off at least 30 minutes before the next dose is due. Education in hospitals is vital.

Moving strangely. People with Parkinsons can move a bit oddly, extra movement is called dyskinesia. I have friends who say they can't walk in a crowded space without whacking people with an uncontrollable arm. Likewise the foot won't do what is taken for granted, just step, it looks unbelievable.  A dear friend had dyskinesia so bad she would fall off a chair very easily. Imagine that. Control is gone. Rigidity and Bradykinesia or slowness of movement is another symptom, it feels like moving through thick mud when doing automatic tasks. 

Why is WPAD important? 

We need greater understanding of this complex health condition that affects so many in our communities world wide. 

Look at the website for information and printable materials, use #UniteForParkinsons in social media

I didn't get the book but I hope you get the message. 

https://www.worldparkinsonsday.com/

millionaires

Millionaires......

Driving into downtown Vancouver the taxi driver tells us the the properties are worth millions 

Arrived at our hotel, Rosdale on Robson in Vancouver Canada at 8am after a flight of over 13 hours from Brisbane, Australia. Our suite was ready and sooooo comfortable. Shower and nap then off to the Granville Island markets, lunch at Bridges. Whilst searching for moccasins for Matt's mum we founds heaps of cool stuff: Canadian flag hip flask, Vancouver Millionares Cardigan and, fat quarteres for my next log cabin quilt etc, etc. I must say it was an outstanding day! The average person in Vacouver is courteous, friendly and secretly cool. The street people are ever present and humble "hello, can I ask you for 75cents?" The seagulls were monsterous and polite too. 

A vintage sports shop caught our eye at the Granville Island Market, we like retro and original logos, what caught our attention was the Vancouver Millionares Hockey team logo. A team long gone but the V lives on in history and on hats, t shirts, cardigans. The Vancouver Millionares won the Stanley Cup in 1915, in a five game play off the Millionares beat the Senators. The shop paid homage to many champion baseball and ice hockey teams, the sales guy was so fun and friendly.  

What's this got to do  with PD?
Some big personalities in American sports will be at the upcoming World Parkinson Congress, and I hope to interview some of them, champions that are encouraging PWP to live with hope and strength Brian Grant, Maryum May May Ali, Ben  Petrik.
Ordinary PWP who are not sports stars but champions of the people are on my list too and I invite all attending the WPC in Portland 20-23 September to visit the Radioparkies Booth 820 and say hello.
Poutine, fish tacos and wine at the hotel sports bar completed our first day in Canada, what a fabulous day.
So rich in many ways

Thanks DJRobert for filling in for me, here is the latest show. 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-rob-on-06-09-2016/

The countdown to the World Parkinson Congress is on!

The planning committees have fully prepared an amazing event "Bringing the Parkinson's Community Together" is the goal and with that in mind, advancing science, promoting community and inspiring hope will be the outcomes. The committees are numerous: Steering, Program, Advocates for Parkinson, Fundraising, Local Organizing, Organizations, Communications, WPC 2016 Ambassadors and the various sub committees. The WPC are designed and held every three years, it provides an international forum for learning about and discussing the latest scientific discoveries, medical practices and initiatives related to PD. Bringing the community together in order to advance the worldwide dialogue and ultimately find the cure for this disease. This is from the program for the WPC. 

It makes you want to go? Book those tickets. Not much funds? Plan for next time, perhaps it will be closer to home?

I am going!

Yes indeed. This will be my second WPC, in 2013 it was in Montreal, I submitted an abstract in the Living Well with Parkinsons category of the Poster display and was fortunate to receive a travel grant from the WPC. My three daughters volunteered at the congress. This year I am the beneficiary of a travel grant again, my paper called Webradio station Radioparkies.com entertaining and informing people with Parkinson's will be at the Poster display at Exhibit Hall B Level 1, Poster Board number 40.04, for the duration of the Congress. I will be at the poster 11:30am - 1:30 pm Friday, September 23 to meet delegates and answer questions. The poster area is one of my favourite places. 

The Living with PD Topics: public education or awareness programs; Gov advocacy, campaigns, public policy, Living well with PD, Advancing research via fundraising, trials and  educational campaigns. All abstracts selected for display will be published in the journal supplement and CD.

The scientific topics: Basic Science, Clinical Science and Comprehensive Care cover numerous areas and all abstracts will be published in the journal supplement and CD. Thank you to the generous, wonderful people and organizations that make funds available for travel grants. 

Radioparkies DJ's are going too!

A collection of DJ's will be in the Exhibitors Hall talking about Radioparkies.com, how to use the website, listen to the radioshows, conducting interviews and broadcasting live from the WPC!! 

Meet your favourite DJ's at Booth 820. Who will be there? Laura, Jimmy, Pete, Andy, Dan, Chrissy, David, Madonna, Andre, Tanna, Chris and Matt. Please come and say hi!

Let your voice be heard.....

Thats the motto of Radioparkies. If you are a PWP or in anyway associated with Parkinson's, I want to hear from you, please be a special guest on my weekly radio show. It's important to share your perpectives, interests, passions and ideas. Why? Because you are great! The list of people who have been on my show is the 'who's who' of amazing, you are invited to be a part of it too. Send a message and lets do this.

Fridays show
Special Guest Carol Wood and I talked at the beach, Queen dominated the Q list.
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-26-08-2016/

I have a choice

Recently an article has been circulating that is so good, it must be shared. But not all at once! Oh no, it's good to ponder it piece by piece.

I always have a choice - It may not be an easy choice, but I have a choice. I did not choose to have Parkinson's disease, but I can choose how I live with it.

That is a powerful statement, there is truth and honesty.

This week on the radio show, a gentleman called Mark Ereira talked about the happiness of living in a care home and being able to give back by entertaining the residents with karioke and playing the harmonica. Mark played Fly Me to the Moon on the harmonica and sang Mona Lisa which were recorded for the show.
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-06-07-2016/

During the process of interviewing I have learnt the basics of editing which is sort of fun when the save button has been remembered is clicked on. The 'undo' is my favourite symbol. A new program has been installed because I'm trying to make a catchy jingle for the start of my show. Thanks Mr Tech! Hmmmmm, not managing very well, actually managing to do nothing but crash the program and fall asleep at the computer. If there is anyone out there with some jingle skills.....would love a cool intro to my show. Pretty please.
Actually, why not make it a jingle competition, the winner will have the glory of having the jingle played world wide on Radioparkies, send entries to parkies@live.be

Happy Friday

Happy New Year! With the new year comes new beginnings, another chance to start anew. Have a look at life in a fresh way. Planning a NFY resolution? I am!  Here it is......Get more sleep 

The takeaway message from Linda Rondstadt in the interview below is really vital for everyone and especially for people living with Parkinson's. 

The recording of Friday's show is below. 

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-01-07-2016/

Further to what was mentioned in the interview,  LSVT BIG AND LOUD are treatments that specifically address the freezing symptoms that can occur with speech, walking and other activities of daily living.

There is  free webinar opportunity coming up on Wednesday 13 July 2016, give it a go.

www.lsvtglobal.com

Smaller steps and shuffling walk are classic traits of Parkinson's, it is possible to retrain your walking style. There are videos showing the exercises for LSVT BIG available on YouTube, it's all about big movements: big swinging arms, long steps and striking the heal first when walking. 

A soft voice is also very common with Parkinson's, LSVT LOUD is about speaking loudly and using the voice with intent, projecting the voice and making your voice be heard. 

Next Wednesday on my Radioparkies radio show

Show Tunes! Yes!  Special guest is Mark Ereira, Sydney

Get ready to sing along to your favourite songs from musicals old and new. 

Be transported to another place and time......

Send your requests now to 

parkies@live.be

Let your your voice be heard! 

Rewind

A bit of background 

I'm Madonna Brady, of Brisbane, Australia I'm a younger person living with Parkinson's Disease, Young at Park Support Group Leader, member of the Management Committee for Parkinsons Qld and a DJ on radioparkies.com 
I'm also an advocate for quality of life activities for people living with Parkinson's.  It was just over four years ago that I was diagnosed with idiopathic young onset disease. That seems so long ago, it was the very beginning of my education into PD, having no knowledge or experience of any neurological conditions, the search for what I could do to help myself had begun. 

Knowledge is power

In 2013 I attended the Montreal World Parkinson's Congress, having written a paper on what I think was needed for my area, the paper was considered worthy of a travel grant. The poster version was displayed in the Poster Hall of the congress with hundreds of other posters from scientists, researchers, health specialists, people living with pd etc. Accessibility to Parkinson's specific exercise is still a very real issue when living well with PD, affordable activities in the community are essential and vital.

 

Last year at the Australian Parkinson's Conference, I was approached to become a DJ on the Belgium based web radio station Radioparkies.com and I have just celebrated the year with a 'Party Playlist' on my weekly Wednesday night radio show. Being a DJ is an amazing thing and I love it, there are highs and lows as with anything in life, but we must keep going. Keep playing the songs. I enjoy finding the songs, researching themes, having conversations with Parkies and people associated with Parkinson's about their lives and raising awareness by getting their stories broadcast on the world wide radio station. 

I believe music is a way to lift the mood, change the day and transport us to a different place.

I have written a new paper for the upcoming World Parkinson's Congress in Portland USA this September, it's about the use of Radioparkies Web radio station to entertain and inform people living with Pd. I have been awarded a travel grant from the WPC to attend the meeting and display the poster yet to be made. Speaking at PD support group meetings about the how to use the radio station and website is exciting and Ipswich was the first group in mid June 2016. Volunteering as a DJ in Radioparkies Booth at the Portland Convention Centre will be awesome.

Let your voice be heard

Listen live

http://www.radionomy.com/en/radio/radio-parkies

www.wpc2016.org

www.radioparkies.com